Sorry for the seven-week hiatus since my last post, but I’ve been busy. In that interval, I took a vacation (Finger Lakes and Niagara Falls); had a major fundraiser for a charity I lead (my high school’s alumni association, which funds educational improvements at the school); did the usual spring yard work (which gets harder each year for some reason); and most time-suckingly, I’ve been writing an invited review article on clinical trial design in PSP.
The authorial invitation came from the editor of a journal with the unwieldy name, Alzheimer’s & Dementia: Translational Research & Clinical Interventions. I don’t know — maybe whoever proposed that refused to shorten it but agreed to replace the “ands” with ampersands.
Anyway, one topic touched upon in my manuscript is the possibility of using wearable, wireless motion sensors in PSP drug trials. If such a thing could be used at home, the resulting reduction in trial site visit frequency could make life easier for travel-challenged patients and their accompanying caregivers. It could also provide more frequent assessments than are possible with in-person visits, avoiding some sampling error and the artifact of an unfamiliar environment in which to walk.
My latest information, based on hearsay and the published literature, is that the most convenient and otherwise suitable motion sensor system for those with PSP is called Mobility Lab from a company called APDM. It can serve the purposes of gait monitoring in a PSP trial using only three wireless sensors, one strapped to each ankle and one on the lumbar area using a belt. I read through the 46-page user’s manual, which is written for research personnel familiar with electronic data gathering. The technician has to manipulate four electronic devices besides the sensors themselves. While a tech-savvy layperson would be able to do it just fine at home, most people would not.
So, the device isn’t ready for prime time use at home in PSP trials. But it could be used at the trial site to record a nice raft of gait measurements of potential research value that can’t be derived from a traditional neuro exam. Besides, the precision of some of the device’s measurements exceed that of the PSP Rating Scale, allowing smaller and/or shorter trials. Downsides: The system only assesses gait, just one aspect of PSP, albeit the most important one according to many of those affected. Plus, there’s no built-in way to assess falling or freezing frequency, though those might theoretically be derivable from the data with some additional software.
PSP Blog 
The 12 month WATCH-PD study was just published using 3 sensors with Apple Watch and iphone to measure different parameters on the UPDRS – would be nice to see this for PSP
Adams, J.L., Kangarloo, T., Gong, Y. et al. Using a smartwatch and smartphone to assess early Parkinson’s disease in the WATCH-PD study over 12 months. npj Parkinsons Dis. 10, 112 (2024). https://doi.org/10.1038/s41531-024-00721-2
Yes, it would be nice to expand the capabilities of these relatively simple monitoring systems. In the study you mention, the monitoring was performed at home by the patient, but these were people in early stages of PD before they even needed levodopa. They’re not disabled at all, by definition, but there were still practical difficulties. Yet, it might be a possibility for carefully selected people with PSP. I like the non-motor capabilities such as keeping track of time spent away from home and the speech monitoring. One issue mentioned by Adams et al is that the variation in the physical home environments among the subjects affects things like the 10-meter straight gait test, and I imagine it’s hard to enforce the rule not to rely on walls or furniture.
Yes, hard to do a 10 meter gait test at home. I think to be successful for at home testing families need a set of instructions of how they can do the tests but also access to a high school gym or track.
Thanks for creating this blog Larry. If you are ok with it, I would like to do a post about it on my LinkedIn profile.